Wednesday, March 31, 2010

Philadelphia Inquirer article on Front page

Schillings rise to children's challenges

By Ashley Fox

Inquirer Staff Writer

PROVIDENCE, R.I. - Wendy Fonseca's son was loud. He spun in a circle, unable to sit still, and spoke in sounds and grunts, not words, as about 75 people sat quietly listening to what Shonda and Curt Schilling, a hero in these parts, had to say about their boy, who has Asperger syndrome.

Wearing a blue Boston Red Sox T-shirt, Wendy sat in the back row, her husband, Richard, one row up. Their 3-year-old son, Aiden, who does not talk, was found to have autism three weeks ago, and the couple have been struggling to cope with the diagnosis and its ramifications. Wendy had to know: What treatments or therapies, if any, had worked for the Schillings and their 10-year-old son, Grant?

"Patience," Shonda Schilling, 42, replied. "Lots of patience."

The Schillings didn't always have a reservoir of patience. Curt spent 20 years as a larger-than-life pitcher in the big leagues, winning a World Series in Arizona and two in Boston after spending 8 1/2 seasons with the Phillies, while the petite Shonda raised their four children essentially alone. Having a husband whose job required him to parent over the phone from one city after another was challenging enough. Having a child she couldn't figure out and didn't understand was almost too much to take.

Although to outsiders the Schillings appeared to have it all - money, success, the fans' adoration, an immaculately decorated home, four blond kids - Shonda Schilling was disintegrating under the weight of her own unrealistic expectations. She was depressed. Three of her children, including Grant, had Attention Deficit Hyperactivity Disorder (ADHD), like their father. One was dyslexic. Shonda had no help - no baby-sitters, no nanny, no reprieve other than the comfort of sleep, to which she escaped every chance she got.

And then there was Grant. The third of the four kids, Grant owned the word no. To Shonda, he was defiant, unreasonable, and uncontrollable. He didn't want to be touched, or hugged, or rained on. He couldn't play with others. He had no respect for personal space. He wouldn't look you in the eye.

Grant wanted what he wanted when he wanted it, and if he didn't get it at that moment, it was over, for Shonda, for Gehrig, for Gabriella, for Garrison, and for Curt, on those rare occasions when he was home and engaged. Curt thought all Grant needed was discipline, time-outs, and tough love.

What they all needed, it turned out, was the truth.

In the summer of 2007, when Grant was 7, they finally got just that - as difficult as it was. With a diagnosis the Schillings never expected - Asperger syndrome, which is on the autism spectrum - they replaced yelling with patience and slowly began climbing out of a dark hole that until then had offered no exit.

Curt Schilling doesn't enter the house quietly. He's like a bull - flings the door open, yells something to nobody, barrels into his office, then reappears, walking back through the foyer, into the kitchen, through a vestibule, and into the living room to interrupt Shonda. She is as she's always been, easygoing, brutally honest, fun, and unexpectedly funny, with her penchant for dropping an occasional F-bomb.

Curt loves her, as well he should.

The Schilling home is an homage to luxurious fabrics and little kids. There are portraits on the wall of the Schillings at all stages - the children as little ones wearing black shirts and hugging their mom, as adolescents wearing white and smiling toothy grins, in various stages wearing Red Sox gear.

On the piano in the living room sit three replica World Series trophies. Each is three-quarters the original size and cost $22,000. A candle burns nearby, sending a pleasant aroma through the house to mask any odor created by the four dogs that roam the house freely.

And then there's 43-year-old Curt, the walking memento. He's barrel-chested, more so than he ever was pitching during a career that surely will land him in the Baseball Hall of Fame, and wearing an ivory sweater and a 2001 World Series jacket.

"Do you want me to show them how much I love you?" he asked, tackling Shonda on the sofa. It's for laughs, but it's for real.

Curt blurted out something about his company, 38 Studios, which is developing online and console video games, among other things. He said it was off the record, then disappeared, albeit noisily, into the cavernous home that belonged to Drew Bledsoe when he was the quarterback of the New England Patriots.

The Schillings have been there for six years. They would love to unload the house and move somewhere different, but the market has made that impossible, which is probably a good thing. Grant needs structure and routine and the familiar. This house, this set-up, is really the only one he's ever known, or at least the only one he can remember.

Grant, like Gehrig and Gabby, was born at Chester County Hospital while Curt and Shonda were living in Kennett Square and Curt was pitching for the Phillies. Shonda kicks herself now for not picking up earlier the signs that Grant was different - such as not stopping and thinking about how he screamed uncontrollably in his infant car seat in a hysterical way her first two children never did.

"I tell myself the reason I didn't notice anything different about Grant during the first few years of his life is that I was completely overwhelmed," Shonda writes in her revealing new book, The Best Kind of Different - Our Family's Journey With Asperger's Syndrome.

After enduring Grant's embarrassing public meltdowns, his wandering in parking lots, his refusal to participate in circle time at school, and his incomprehensible stubbornness over such simple things as the socks he wore or the foods he ate, Shonda finally got Grant tested. He was 7. And the diagnosis rocked the Schillings.

Shonda blamed herself. She blamed Curt for not listening to her when she'd tell him something wasn't right with Grant. She fell apart, as did her marriage and her eldest son, Gehrig, who refused to take his ADHD medicines and then stopped eating.

"The self-consciousness that I'd always felt as the wife of a ball player stretched to new heights following Grant's diagnosis," Shonda wrote in her book. "Though finding out the truth about Grant had been a huge relief when it came to the practice things and managing his behavior, it had torn me up internally. I was down on myself for all that was happening with the kids and their many diagnoses. I blamed myself for not noticing that Grant was really different and not getting him help sooner."

The incidence of AS is not well established, but experts in population studies conservatively estimate that two out of every 10,000 children have the disorder. Boys are three to four times more likely than girls to have AS.

In the book, which was the offshoot of a speech Shonda gave last spring when she and Curt first acknowledged publicly that Grant had Asperger syndrome, Shonda details how she felt alone, judged, and inadequate. She talks about how she came to resent Curt, how they stopped communicating toward the end of his baseball career, how they were merely traffic cops directing their lives instead of living them.

The Schillings have never been shy. This book isn't a cover-up. Shonda writes about attending couples therapy, her treatment for depression, Gehrig's treatment for anorexia, and the way Grant has changed her and their lives.

"This is a story about being a mom," Shonda said. "I allowed how my kids achieved to determine what kind of parent I was."

"I had no clue," Curt Schilling said of Grant's and Shonda's struggles. "When I was around [Grant] for 24 hours, I was like, 'Who the hell is this kid? This is not mine.' But you start to understand everything is different. Everything I thought about raising a child and being a man and parenting a boy goes out the window when you realize what Asperger's is and how different and in a great, unique, and cool way Asperger's can be.

"Yeah, there are bumps in the road, but there's bumps in the road with everything."

Grant is sitting on the couch in the family room, picking the crust off his Pop Tart and tossing it on the floor for the Schilling's English bulldog, Georgia, to eat.

"Grant, is that a good choice?" Shonda asks.

"Yes," he answers, without looking away from the television.

"Are you supposed to throw food on my floor?" Shonda says.

"No," Grant answers.

"So why was it a good choice?" she asks.

"Because Georgia's right there," Grant says.

It was a classic Asperger response. The Schilling's doctor, Peter B. Rosenberger, founded the Learning Disorders Unit at Massachusetts General Hospital, and he wrote in the foreword of Shonda's book: "On the whole, autistic thinking displays a lack of awareness of what another person is feeling."

In this case, it didn't dawn on Grant that his mother would be angry that he was throwing food on the floor because the dog was right in front of him, and of course the dog was hungry.

"It just becomes a part of who you are," Shonda said with a shrug.

The Schillings have found techniques that make life easier for Grant, and for them. They prepare him for what's coming up in his day, and keep him on a strict schedule. They let Grant make choices - do you want a hamburger or pizza for dinner? - and they rub the palm of his hand when he gets upset.

They're educating their family, too. Shonda already has made Easter baskets for everyone, including her kids and her parents. In them she placed the 2009 movie Adam, which was produced by Eagles co-owner Christina Lurie and is about a romantic relationship involving a young man who has Asperger syndrome.

And most of all, Shonda and Curt don't raise their voices to Grant. Not anymore. When they want to yell, they dip into their reservoir of patience instead.

"We're figuring out different ways to handle him," Shonda says. "But I know, I can never expect his reaction."

That won't change. What's changed in Shonda is she doesn't care now how other people react to Grant. She doesn't care what people think about her, either. She's comfortable in her own skin, and in their lives, which is why, ultimately, she wrote the book.

Shonda wants to help people, particularly parents, such as the couple who drove 25 minutes from their house in Somerset, Mass., in the pouring rain to the Schillings' book signing in Providence on Monday night.

"I think it's really helped my husband, because he's had a hard time with it," said Wendy Fonseca, whose son recently was found to be autistic.

"People think highly of [Curt Schilling] on the field," Richard Fonseca said. "If they can come out and say that 'my child has a disability,' it's OK for us to say that, too. We don't have to shy away from that. The more people who come out and say it, because it's a big epidemic, the easier it is for everyone to say that."